Day +5: Window of opportunity
April 15, 2020
It’s been a while since I’ve said this, but we had a good day! Though we’ve had glimpses throughout the days, I can officially say that today, as a whole, was good. The highlights include fewer bouts of extreme hiccups, being fever free the entire day, and walking a whopping 20 laps – a vast improvement from yesterday’s three.
Ramón started two planned immunosuppressants today, and we didn’t notice any adverse reactions. He’ll be on one of the meds for about a month (CellCept) and the other for at least 100 days (Prograf). Ramón also started Neupogen injections, which should boost his immune system. It’s an interesting shift because now, instead of actively trying to fight leukemia, the goal is to make sure the cells play nice. The most common post-transplant complication is graft versus host disease (GVHD), a condition where the new cells accidentally start attacking the recipient's healthy cells. Let’s hope that, before we know it, all the cells are singing kumbaya in unison – maybe even harmonizing.
Today Ramón had some nutrition that wasn’t in a bottle labeled Ensure! If you know him, the thought of him not eating is outlandish, but his body has been through the wringer recently. In total, he ate one small slice of a mandarin orange, three pieces of shrimp, a few spoons of sherbet, about an inch of a vanilla milkshake, and four bites of salmon. He also got a med to help remove excess fluid from his body, and he lost 8-9 pounds today. Crazy, huh?
When I was looking out the window, trying to remember what outside air feels like, I saw a helicopter arrive with a patient. I watched as hospital workers in gowns and masks unloaded the person onto a stretcher. Moments like these happen often at the hospital: times where you pause and reflect on how fragile and precious life is. Everywhere I turn, there are reminders that our world can change dramatically in mere seconds.
Around 7:30 p.m., we started hearing tons of sirens outside. We looked out our penthouse window and saw a parade of 100+ police cars, ambulances, and firetrucks, lights flashing and horns honking. We realized it was shift change and that they were thanking the healthcare workers.
The window gives us a glimpse beyond our own world: a dose of perspective.
Day +6: Swallowing pride
April 16, 2020
Today has been a painful day for Ramón, but we’re ending the night on a pretty good note. Until we were thrown into this cancer fiasco, I’ll admit I didn’t know much about the details of chemo or radiation. However, both treatments aim to target rapidly dividing cells, ideally the cancerous kind. The body has many other types of rapidly dividing cells, though, like cells in hair follicles – hence hair loss – and the digestive tract.
Though we all know Ramón would have a luscious head of hair if not for the cancer, today he’s been struggling with the digestive tract side of things. His mouth and throat are very sore and painful, so we’ve been working to address that for most of the day. After what felt like many strikes, we’ve finally hit on some effective ways to keep Ramón comfortable. Since his white blood cell count is undetectable, this issue won’t resolve itself as quickly as we’d like. So, the goal is pain management until he can begin healing on his own.
Despite excruciating agony, Ramón was motivated enough to walk periodically throughout the day, and we totaled a whopping 21 laps, surpassing yesterday’s total by one. His stubbornness is occasionally disadvantageous (e.g. managing pain in a timely fashion), but, for the most part, it enables him to achieve the seemingly unattainable goals he sets (e.g. walking laps, landing me as a partner).
Although we had some pretty low moments today, we can go to sleep confident that tomorrow should be better. Sending love far and wide!
Day +7: The sky's the limit
April 17, 2020
Whew. Today has been up pretty high on the “hard” scale. A trip to the bathroom at 4:00 a.m. yielded a small battle scene. Ramón’s PICC (a long-term IV running to a large vein in his chest) got tangled up in his IV pole and managed to escape his arm entirely. Because his platelet count was so low and his blood was slow to clot, this resulted in three nurses cleaning up while a literal sandbag was placed on his arm to apply pressure and stop the bleeding. Then he got a unit of platelets. Rise and shine.
Ramón’s throat pain is still quite severe, and that has been our biggest challenge. Hiccups who? We’re still working to make him comfortable, but his symptoms will likely last until his white blood cell count starts to recover, enabling him to heal. It’s brutal to watch the torture he experiences merely swallowing water. Please let the healing come as quickly as possible.
Through his pain, Ramón and I managed to walk 32 laps together – about three miles. Around lap 13 or 14, we passed the nurses’ station and saw them looking at a menu, picking out lunch. Barely audible due to his throat, Ramón tapped me and said, “We should pay for their lunch.” After a moment of processing, I realized that, even during one of the toughest days of his life, his kindness prevailed. So, we ended up spending $177 on sandwiches. Although Ramón hasn’t eaten lunch since April 5, his thoughtfulness filled the stomachs and hearts of some very hardworking people.
Since today had us feeling defeated and depleted, I’ve been eager for it to end so we can start anew tomorrow. All day I told myself that, if the sunset was beautiful tonight, we’d be in good shape for tomorrow. We dozed off watching some TV, and I woke up panicked that I missed the sunset. I hurried over to the window, and what I saw left me speechless. Actually, that’s a lie because I was obnoxiously yelling for Ramón to come look. This heart in the sky let me know that things will get better. They will indeed.
Day +8: Doggie doo
April 18, 2020
Breaking news: Ramon still feels pretty crappy. His counts should start recovering in the next several days, we hope. I’d love for it to be tomorrow, but I don’t want to get greedy. Once Ramon’s white blood cells start coming in, we should see a lot of improvement. Bring ‘em on!
Today was tough, but thankfully Ramon got some much-needed rest. We did half of a lap, but Ramon just wasn’t up to it. I tried my best to keep myself busy, but I did have my moments of simply staring at him while feeling hopeless. It’s very difficult to watch a person suffer; it hurts all the way to my core.
I’ll end on three good things that happened today:
Our buddy from food services saw me walking in the hallway and gave me a packet of Jelly Bellies. There was no rhyme or reason; he was just spreading joy.
One of Ramon’s colleagues posted photos of her children in Share Love, That’s All shirts. This particular family knows all too well how much cancer sucks, and it was uplifting to see them support a cause I have grown to care about tremendously (www.sharelovethatsall.com).
Finally, I was doing some bedtime laps and saw this in the hallway. It must have recently arrived, but it gave me a chuckle. It made me want to keep doing laps.
And, with that, hopefully we feel a little less dumped on tomorrow.